Another day, another blog post! Yesterday was #ostomyawarenessday and you may have seen me posting about this lots on my social media. It was fantastic seeing so many ostomates sharing their stories, photos and information about their ostomies, why they have them and what it means to them.
Lisa is someone I first started chatting to right back when i joined some IBD Support groups on Facebook. She is the same age as me and had not long had her surgery. Although she didn’t know it at the time, Lisa was one of the people who gave me most confidence when i was told I needed an ostomy. Seeing Lisa coping really well with hers, still being able to go to work and maintain a relationship etc., made me feel so much better about things and that an ostomy wouldn’t mean the end of my life as I knew it.
We are now in almost daily contact and I class her as one of my best friends. She has a fantastic Instagram account and a fab Tik Tok sharing all sorts of things about her life with an ostomy including fashion advice, as well as being a fantastic suipport for others with IBD and ostomies. One thing Lisa suffers with is fistulas, which are something you can get if you have IBD. I am very lucky and haven’t had to ever deal with this (touch wood) and so I learn a lot from her and I thought it would be great to ask her to share some more about this as part of the interview.
Introduce yourself – tell us about you! Do you have any hobbies?
My name is Lisa, I’m 33 and from Dublin Ireland. I used to be a Montessori teacher, but due to my illness and having surgery I had to give up work for the time being. I like dancing and listening to music.
What have you been diagnosed with? Can you tell us a bit about your stoma surgery, when it was and why you had it?
I was diagnosed with ulcerative colitis in 2004, in 2015 I flared really badly and after doing tests my gastro team changed my diagnosis to Crohn’s disease. I had a perianal abscess and a RVF which stands for a Rectal vaginal fistula. All of these were making me sick and I developed sepsis, so I needed surgery ASAP. I was told I would need a loop ileostomy and it would be temporary. But 5 years on I know it’ll be made permanent as my Crohn’s is too bad.
You also have a fistula. Can you explain what that is for people who have never heard of them, and how it affects you?
A fistula is an abnormal tract which joins from one part of body to another, typically in IBD its from the bowel to elsewhere, in my case the fistula is connected from my bowel to my vagina. The fistula affects me because a seton is in place to keep the fistula open so that it doesn’t get blocked. This can cause complications like infections. A seton is a surgical material which is put through the fistula passage. A mixture of both of those things can cause discomfort and pain and I have to use absorbing pads to collect anything that drains out the fistula.
Following your stoma surgery what would you say your three biggest fears were? How have you overcome them?
I was afraid I wouldn’t be able to wear what I wanted and people could see it under my clothes and I’d need to live in baggy tops and bottoms. I’m 5 years post op now and I’ve learned how to dress with it and what suits me and what doesn’t and what I’m comfortable in. My second fear was I wouldn’t find anyone who’d love me. I’d find it hard to bring something like this up in conversation, as I’m a very shy person at times. But I was wrong, I was lucky to meet a man 5 months after I had my surgery and he’s got Crohn’s too. My third fear was it would stop me from doing things. But it’s given me my life back. I’m able to go for long walks or trips In the car, as before I had my bag I couldn’t do that without needing the bathroom. I’m able to enjoy nights out or trips to the cinema, as before I would miss most of the movie, as I’d be in the toilet.
You run @lisakateostomate and post lots about fashion with an ostomy. What makes this such an important thing to talk about?
I love fashion and shopping and I wanted to share my fashion tips with other ostomates. I like to share how I dress with my ostomy, as it can give people some ideas. I find it important as, someone maybe just weeks after surgery and feel lost and alone. I don’t want others to think just because you have an ostomy you can’t wear what you like. You can still be sexy, and you’ll find clothes that work for you. I try help others going through similar, when I can. I like to think of my page as a safe space.
What are your top three tips on dressing when you have an ostomy?
Patterns are great for me as I’ve a hernia, they can disguise any lump like that or bulge from the bag, if you’re self conscious. I love peplum tops, clothes like this are just great and I lived in them weeks after my surgery and do to this day. The peplum design kicks out at the bottom near the waist, so it doesn’t cling to you and you can’t see your bag. My last tip would be to wear what ever makes you feel comfortable and good in. For me jeggings are amazing, I find jeans uncomfortable. So jeggings have that stretch and have no zips or buttons. Sometimes I go up a size In something so I’m comfortable. Just because you have a stoma, doesn’t mean you can’t wear the same clothes, you wore pre-surgery.
You also share lots of fab Tik Tok videos that are ostomy related. Let us know your handle over there and let us know why you like doing them.
Thank you, my handle is Lisalemons86. I started tik tok during lockdown for fun, something I seen a few people do. So I thought I’d give it a try, I make different ones, but I also do some to raise awareness, as there’s a few other ostomates and IBDers on there too. I like to try reach out and help others and educate people by making it fun.
How have you found lockdown? Did you have to shield? Do you think its affected your mental health?
I’ve been finding it hard, I’ve my good and bad days like us all. I’ve had to shield too. I suffer with anxiety and panic attacks as it is, so I think being home to keep myself and my family safe has made things harder to deal with. This is a scary and uncertain time for us all. I’ve texted, zoomed, FaceTimed, Skyped and got to see people at a distance which has helped.
You are in a relationship with someone with IBD – tell us about how you met and why it works?
We met 6 years ago on social media for an IBD support group and he has Crohn’s too. Both of our issues with our illness are the same. I like how it works, we just get each other. I had my ostomy the year we met and he has always been by my side. I was shy at first but he understood what one was and he loves me regardless of my ostomy. He’s helped me change it and deal with leaks.
We’ve supported each other through the good and bad times. We both understand how unpredictable IBD can be, we both know the pain and frustration of living with it. We comfort each other through the difficult times or when one of us have been too sick or tired to go out. I know I can tell him how I’m feeling and he gets it and he reassures me and vice versa.
Even though we don’t suffer the same way, I’m able to help him through my own experiences, and he does the same for me too, we’re always on the same wavelength which helps us both in a lot of ways.
He’s like my best friend. IBD is tough, but if it wasn’t for it, we wouldn’t have met each other. It’s the one positive thing to come from it.
Being a part of the IBD and ostomy community we know lots of women who have had babies after stoma surgery – is this something you have thought about? Have you been advised to hold off making your ostomy permanent (by removing the rest of your rectum etc and giving you the ‘Barbie Butt’) before having children if possible?
I’ve always wanted to have my own family one day and so does my partner. Everyone’s case is different, but my own team have advised me to hold off on making my stoma permanent if I can before having children. But as I mentioned, this doesn’t always apply to everyone, as some women I know have gone onto have children post barbie butt surgery.
What three pieces of advice would you give someone who is facing ostomy surgery or has just had one?
I would tell them that there is a great big community out there, that will help you in this journey. You don’t have to go through it alone. I was apart of a support group at the start and I had friends go through similar. So I reached out to them for help. I know it’s a hard thing to adjust to. Take your time after surgery, don’t rush things, it’s normal to feel overwhelmed and upset. I was the same for a few months, you’ve gone through a big thing. Get as much rest as you can.
Make a list of things you want to take to hospital with you, like pyjamas, comforts from home like a blanket or your pillow, ear phones, iPad, a book. Something to help take your mind off things and help pass the time. Ask your team plenty of questions, if you feel they’ve not explained things or you don’t understand something. For example, what type of surgery will it be, eg keyhole, how long will you have the bag for? Some may only need it temporarily.
Back when I had mine I was given a list of Do’s and Don’ts when it came to food. I don’t know If they still give them out, but take it slowly with food. What I can eat, you may not be able to, Everybody is different. Keep a food diary and introduce things slowly, remember to chew well and keep hydrated. If in doubt contact your stoma nurse.
What are you looking forward to in the coming year?
Hopefully by then things will be a lot better than they are now. So I’d love to go away on holiday with my partner. I think everyone will be needing a holiday after this year. I’d love to see my friends who live in England and America and spend more time with my family.
I just want to say a huge thank you to Lisa for sharing her journey with me and all of you. She is such a ray of sunshine and is such a helpful and supportive voice in the IBD and ostomy communities. I am looking forward to the end of all the Covid restrictions as me and Lisa are planning to FINALLY meet up. I have never been to Ireland and would love to visit the country and my beautiful friend!
I hope you enjoyed reading this one and will go check out Lisa on social media! Take care and keep safe,